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How to be a Patient Advocate

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The following is a guest blog written by Beth Cavenaugh, the author of Some Light at the End. Beth is a Certified Hospice and Palliative Care nurse with a rich experience in caring for patients at the end of their life. We are grateful to have her wisdom shared here. 


My friend *Susie had a kidney transplant recently, and when I took her to one of her follow up appointments, I was reminded of how important it is to have the tools to be an advocate for your loved one. I am going to give you some insider tips on how to get the answers you need, how to make the system move a little quicker, and how to get better overall care for your loved one.

As we were walking to Susie’s post-operative appointment, she became short of breath and could not remember which floor of the clinic she was on. Now this respiratory symptom was very new, and Susie is sharp; she remembers all of her meds, her doctors, and has been going to this clinic for years. I was concerned.

When we arrived at the clinic, the receptionist asked, “Susie, do you need a nurse?” Susie said, “No, I'm just going to sit down.” Susie is relaxed and unphased by her symptoms, she has been dealing with discomfort and poor health for years. She is not alarmed. The receptionist continued to type away. I asked Susie if we could get a nurse because I was concerned about her shortness of breath, and she nodded yes. I returned to the front desk and with a grave look on my face said quietly, “I think she needs a nurse — I have never seen her like this.” 

When there is a distressing symptom like shortness of breath, confusion, pain, make a big deal about it, because it is a big deal. 

flower in the spring

The receptionist was lovely and the nurse came out immediately and took us back to start her exam. As Susie responded to their questions, I was surprised to hear she had episodes of feeling sweaty and hot yesterday. Let the patient tell their story, answer the questions and make their own decisions whenever they are able. Susie knows her body, her medications, and how she is responding to treatments better than anyone will ever know. I let her answer the questions, and I offered more information when she was too tired to tell the whole story. The doctor requested we go to the emergency department and Susie agreed. Patient autonomy is the right to make your own decisions about your medical care.

 

“This is what it means to have autonomy - you may not control life's circumstances, but getting to be the author of your life means getting to control what you do with them.” -- Atul Gawande

The doctor sent us to the emergency room to rule out heart failure and pulmonary embolism. When he mentioned ruling out a blood clot, I was thinking, holy shizzle, if Susie needs to have surgery, I have to talk to her family members whom I have never met. So I asked Susie who her most important people are. I called her sister and son right away. Get important family member phone numbers and provide them with frequent updates, even if you do not have any information. It is awful to stand by and not know what's happening to your loved one, and most people imagine the worst case scenario. 

We were escorted to the ER by the renal team, and the receptionist told us to have a seat. I wondered why we were waiting in the ER as Susie is extremely immunocompromised because of her anti-rejection meds she takes every day and has shortness of breath (one of the main Covid-19 symptoms). I walked up to the receptionist and told them, “I am wondering if you know that Susie is a postoperative kidney transplant patient and is extremely immunocompromised? I was hoping she would get a room right away.”

Be a kind, persistent, and squeaky wheel. 

 
Autonomy is a multidimensional ethical concept. It is the right of a capable person to decide their own course of action based on personal values and goals of life. Self-determination is a legal right.

HPNA definition of autonomy

 

 

The receptionist was very responsive, and the triage nurse came out right away and took some vitals and asked her some questions. Susie was getting a little tired and gave minimal answers. I stood by, listened, and offered some tidbits to expedite her care. “She is a recent transplant patient. She has sudden shortness of breath…” The nurse looked surprised: “What kind of transplant?” 

flowers

You will have to tell the story again and again and again; even though nurses and doctors have all the medical history at their fingertips, sometimes they do not have the time to read it, and sometimes the most important information is not flagged in a way that is helpful. 

The EKG tech began to put leads on her chest. Susie had applied cocoa butter to every part of her body that morning, and the leads would not stick. We all had to hold the leads in place to get a reading. Susie was laughing “I didn’t want to be dry and scaly at my appointment.” I marvel at Susie’s relaxed nature and her smooth radiant skin. I make a mental note to get some coco butter. She has been dealing with the health care system for years and is much more patient than me.

I asked the tech to wheel Susie out for me so I could carry out her 100 pound purse, water bottle, paperwork, and robe. Kindly ask for help. Sometimes healthcare workers are so busy they do not have the time to offer help. And I use the word kindly because you really do get more flies with honey. 

We get a room in the ER, and as we walk to our room, we pass a confused patient who is literally getting a gaping head wound sewn up in the hallway for all to see. Choose what to look at because some things you cannot unsee. This does not have to do with advocating, it is more for your own sanity.

Then a pharmacist came in the room and asked us questions about her medications. Susie recites her 18 medications by heart. Suzy knows her stuff. Have a physical copy of the latest medications with you for clarification. I had no idea what medications Susie needed and I am now regretting that I was inadequately prepared for this appointment. I also do not know a thing about her medical wishes. Does she have an advanced directive? Has she ever filled out a POLST (Physician Order for Life Sustaining Treatment)? Has she appointed a health care representative? If Susie required surgery and was unable to make decisions for herself at anytime, these are critical things to know.

The only available chair was directly in front of Susie so when I sat down, I was staring directly down Susie's midline. I moved the chair so I was more at her side and figured out how to work the TV so we could have some distraction. You can remodel the room a bit so it is a more comfortable setting for everyone.

Susie’s brand new kidney is working like a charm, but unfortunately, she has to drink a lot of water and pee a lot. She is now receiving an IV phosphorus infusion, and every time she has to pee, she rings the bell. Our nurse is lovely, receptive, and quick to stop her IV and get her out of bed. I am grateful for his swift responses and engaging approach. They do not walk her to the bathroom so I go with her to make sure she is stable. I wait outside the door for her, too. Have someone in the room as much as possible. Stay with the patient if you are concerned about their safety or stability. 

Because we were originally going to a one hour appointment, we did not bring snacks of any kind. By lunchtime, I was getting a little grumpy with low blood sugar. Susie, of course, was unphased. This gal is a rock. When I asked if they had lunch available, he brought her some water. The ER rarely expects that people will stay for meals. Bring snacks—you will not regret it.

Of course, when I left to gather us food from the cafeteria, the doctor came in and when I returned, Susie could not remember everything the doctor said. I had to do a little digging with the nurse to find out her EKG was good. No heart issues! CT was clear! No pulmonary embolism! 

doctor and patient

Informed consent is when a healthcare provider — like a doctor, nurse, or other healthcare professional — explains a medical treatment to a patient before the patient agrees to it. This type of communication lets the patient ask questions and accept or deny treatment. -- Healthline

Again, stay in the room as much as you can because the medical professionals come in when they can. They do not make appointments with the family and you may miss some vital information if you miss this physician drive by. I repeat: bring snacks, but also bring things to do such as magazines, computers, books, cards, or anything else that will keep you in the room. You may also want a jacket, because the temperature can be unpleasantly cool.

Susie was discharged that evening, and we forgot to ask about her follow-up appointment. I called the after hours renal clinic and asked. If there is an after hours number for any questions or concerns, do not ever hesitate to call it.

It can be confusing and frustrating to help navigate the healthcare system for your friend or family but in this case, Susie was relieved to have an energetic ally present. Many patients living with a chronic illness are too tired to fight and accustomed to waiting. It is a profound human experience to bear witness to your loved one’s reality and to see and reflect on the work they have been doing for years—their patience and persistence. Susie was amazing - calm, cool, collected, and quick to laugh. Stick with it, be prepared, be a persistent, kind, and squeaky wheel. Sometimes, a friend's assistance is the most reassuring and effective medicine. 

Blessings. 

My friend, not named Susie did grant me permission to share this story.